Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall.I don't want to write too long a post so will try and keep the background brief.
Basically I was diagnosed with Fibromyalgia by my GP back in 2010 following a few years of firstly indescipt symptoms and then being hit by intense back pain (discs were suggested) over a few months the pain spread out to affecting all my limbs and after reviewing all my history (Raynaud's, migraine, childhood trauma, depression, IBS .......etc) I was told Fibromyalgia. I was so bad I had to give up my nursing career. GP also did an annual blood test for Lupus until he retired as he strongly believed it was a possibility in my case, but it's been refused since.
For the first few years, other than the grieving for the old me, I mostly coped especially with the support of my husband and kids. But I knew I was getting progressively worse.
A gastric issue got me eventually referred to a pain doctor although they didn't do much by way of assessment, and I did see a rheumatologist once who did trochanteric butsa injections for me, but seemed happy with my fibro diagnosis.
Some private blood tests threw up the probability of thyroid issues, but the GP ones didn't agree. A head MRI showed I have Empty Sella Syndrome and I was sent to Endocrinology but again no real input there.
Again I tried to just keep going whilst getting worse. Odd trips to GP with new symptoms which resulted in physio referrals but the physio would only treat the specific areas referred for and worsened other areas instead 🙄
I have cervical spondylosis in my neck (diagnosed 2012ish) and following a GP visit last November requesting further bursa injections I was sent for a lumbar CT which has now shown lumbar spondylosis with arthritic changes and mild disc bulges.
I asked for an MSK referral hoping I could have a corticosteroid injection to relieve that intense pain and allow me to try and get back to pottering, currently I'm stuck with my heat pad on constantly to try and get me through the day and occasionally having to take my Longtec (mst) which in reality is my go-to medication on days I need to actually do something important and I really dislike taking it on stay-home days.
The consultant at MSK was lovely and could clearly see how much pain I was in so didn't even do a physical assessment but told me he wasn't able to give a corticosteroid injection due to the new NICE guidance. Instead he referred me back to the pain team.
They say they are also tied to the same guidelines and won't do anything injection for me, not alter my medication review.
In addition to all the above (which is longer than I'd intended) over the last few years I've been experiencing intermittent elbow pain which includes the elbows swelling, going red and being hotter than elsewhere,with the same issue to my right knee. Over the last 18 months my fatigue levels have also increased dramatically and my recovery time from any activity has doubled or even trebled. I also get a lot of pain in my hands - tendons etc especially if I try to do anything craft related the next days are horrendous.
In my last phone consultation with the pain team, they have agreed to write back to the GP to request a full, back to basics reassessment with bloods (hopefully) to explore the possibility of an inflammatory condition (lupus, rheumatoid arthritis or other) being added to the mix. I don't have much knowledge of family history but I know my mother was diagnosed with juvenile arthritis and struggled throughout her life with flare-ups, and I have issues with,y eyes that my old GP thought was probably Sjogrens.
So in a nutshell (!) and hoping that the GP agrees to start afresh, has anyone any advice on notes I should take with me when I can get in, questions I should ask, and tests I should definitely hope are included in any blood tests?
Thanks for reading if you got this far!
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Wispymisty
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Hi WispymistyGoodness, we have to be detectives don't we!
It is so hard with complex conditions to find a way forward.
I do not have exactly the same presentation but some elements are familiar.
I present with some symptoms similar to lupus but not all. Hard as FB has cross over on fatigue etc. My body dumps calcium which can be seen on mammograms. Major gut issues and food sensitivity. I was born underweight and not breastfed. These factors may or may not be so for you.
Anyway,my point. I found looking after my microbiome a game changer. I had a vit D deficiency which had led to low mood but also an improvement with probiotics.
Probiotics seem like a minor suggestion when you have so much going on but if gut improves other improvements follow.
I get my probiotics from a large UK chemist as there are many unregulated sellers on the Internet. I figured a drug free change was worth a try.
Complex conditions are draining,even now my identical twin and I have identical symptoms and different diagnosis.
I hope the gut advice makes even a small difference. I couldn't manage without my daily probiotic and kefir
Hi Gigi - thanks for your reply 🙂 I've read a little bit about gut biome in the past and have seen some people get good results from addressing their microbiomes.I was actually born with a fused gullet and used to projectile vomit as a baby. I do have various gastric problems too, but was unaware of anywhere in the UK that would look at it. I might need to look back at the issue going forward....
I used Dr Michael Moseley Radio Dr information and just did it myself. I reduced sugar and increased live foods like kefir, I used to be in hospital twice a year with diverticulitis and gut infections but not since 2019.
Omg you sound exactly like me. They don't like giving the injections anymore, although they help, personally don't understand the reasoning. I've been through the same thing for over 20yrs and getting worse. Good luck, I don't know what else to say. Xxxx
I've just been diagnosed with vasculitis and I have abdominal pain along with eye pain and other things. I'm just wondering if it might be worth you asking to be checked out for it.
I really feel for you and hope that something suggested here helps.
I too have cervical spondylosis with some disc protrusions.
I have tried alternative therapies including physio therapy, acupuncture, osteopaths, chiropractors, the list goes on. The medication I take for the fibro has helped with my neck for many years but no longer provides any benefit for the cervical spondylosis. Whenever I mention my neck to NHS professionals they seem to be unable to help and you are expected to put up with the pain. Would they!
To make matters worse I can't take anti inflammatory meds or pain killers.
As no one seems to be helping and I am not prepared to be fobbed off I insisted on a referral to Spinal Neurosurgery, a referral was made by the doctors surgery and I am now stuck in a long que to be seen, but at least there's hope.
I’m with you. I was diagnosed about 18 years ago, been a member on here for about the same time. I’ve also been through most of the same symptoms as you. I’ve got to the stage now that I hardly ever go out now because I just can’t stand the back pain. I have a mobility scooter but it’s so hard to manoeuvre in shops and apparently it makes me invisible! I can’t go out in the village where I live on it as the pavement’s are treacherous with potholes. I’m so miserable , I wonder if it’s worth carrying on like this. I feel like I’m just a shell and the NHS just can’t be bothered with us.
I’m currently hoping I can be referred for an MRI scan to ascertain exactly what’s going on with my back and possibly prescribed a pain med other than paracetamol. Sorry for the rant but just feel no one cares anymore.
No need to apologise, I think a lot of us feel similar 😔 and it does feel like we're just left to get on with it a lot of the time - like you've got a diagnosis what more do you want? Well the right diagnosis and some proper pain relief would be good to start with.But we keep pushing, hopefully you'll get your MRI and that will change things for you.
I live in a village too, with poor pavements so I can empathise with that, and rely on my husband driving if we do go out. It can feel isolating. He's out some bird feeders right outside our window so I can see them from where I sit and that gives me some joy, especially when there are fledglings.
Keep going and get that scan sorted! You're not on your own
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Help!in need of some advice please.
Arrrrrrrrrrrrrrrrgh
Can some one help me
Pain Clinic Nightmare
Newbie in need 😢🙏
Feeling really crap physically and mentally,in need of some support :(
